Patient Comments: Lymphedema - Symptoms

Question:

Describe the symptoms associated with your lymphedema. Submit Your Comment

Comment from: liab, 55-64 Female (Patient) Published: October 02

My lymphedema started about 40 years ago with my left ankle swelling. I was pregnant and the doctor called it elephantiasis. It was hot weather, about 40. Later it got considerably worse, now both my right and left legs, ankles and feet are affected. I have had liquid ooze from my legs. It hurts to walk and bend over to pick up something. I have a terrible time finding shoes. I can't lift my legs to put on socks.

Comment from: Sassy, 55-64 Female (Patient) Published: August 27

I had stage 1, invasive ductile carcinoma. I had a lumpectomy and radiation. I quit my radiation treatments early after 23 instead of 35. It was due to finding out I was receiving higher rads or grays than was normal. I have had neuropathy in my left foot and now my left breast, and had a 2 month bout of painful swelling lymphedema. My cancer hospital near my home doesn't want to deal with the issue. It finally got better and I was told it will return at some point. I think more could be done.

Comment from: PamJ, 55-64 Female (Patient) Published: January 03

I had a radical vulvectomy followed by radiation and chemotherapy, and years later I had reconstruction surgery. I still work as a nurse and on my feet a lot, and one side of my vulva is really swollen. I went to the doctor who did my reconstruction only to hear, 'my first thought is to do a PET scan,' but I'm not even going to go there. That was it! I wear compression pants for my lymphedema, there is no pain but the swelling seems to be getting hard and larger.

Comment from: Maria DC, 45-54 Female (Patient) Published: May 09

I am going to be 50 next month and I have been dealing with lymphedema for about ten years. It stared very slowly, at first only one leg would swell and I was told it was from sitting too long. The swelling would last a few months in a year, after a few years both legs would swell, and the time it would be swollen was longer and longer. Now they are never normal. I am very depressed because it looks ugly and shoes are very hard to find. I have gained weight because I am not ablate be as active as I should be. I hate looking at my legs.

Comment from: Ana, 55-64 Female (Patient) Published: December 20

My grandmother lives in Portugal and has had cervical cancer for more than 15 years. Since she did chemotherapy her two legs began to swell. Today, she is over 22 lb in each leg. She walks with great effort and sometimes has very high and dangerous fevers. For the first time in Portugal they are doing surgery and treatment to reduce swelling and weight. I just do not understand why scientists do not put more effort into this disease knowing that so many people in the world have lymphedema either hereditary or after cancer.

Comment from: MARVELOUS, 55-64 Female (Patient) Published: September 07

I had breast cancer with lymph-node removal, chemotherapy and radiation in 2005. I was released in 2017 as a choice to continue yearly check-ups. I am now experiencing arthritis symptoms in my arm, hand, etc., I wonder if this could be associated with lymphedema.

Comment from: Maggie, 7-12 Female (Caregiver) Published: July 21

My granddaughter is 8 and was born with slightly swollen fingers on one hand. After she caught her affected ring finger in a door it now swells and has black wire like endings under the top joint. This also peels and is generally horrid to look at. Her school keeps telling us to see a doctor, which we have, but to no avail. They did not have a clue but the last doctor said it was a problem with the lymph system. Wondering if it is lymphedema.

Comment from: Gwen, 45-54 Female (Patient) Published: December 17

For over 11 years I have suffered from extensive leg swelling from the shin area to my ankles. It's usually associated with a temperature on the affected area, a gland usually develops in between my thighs, and the entire leg especially near the ankles are discolored. The entire leg from my shin to ankles aren't only swollen but painful at times also. I was hospitalized for developing ague along with high fever locally. I've been tested and cleared for kidney related diseases, poor circulation. Local doctors are yet to aid in curing my condition and it's beyond frustrating to be enduring at this late time in my life.

Comment from: barbara, 65-74 Female (Patient) Published: November 14

I have had lymphedema for the past 5 years or more. It started out slow then went to draining really badly. I had them wrapped a few times and now they have stopped but at night I have bad itching and can't sleep due to that. Just at night they get like that and I have the stockings to wear and I'm trying to get used to them because I don't like to go out and have people look at me like I'm weird with my legs this way. I really wish it would go away but I guess not. Mine started after I had knee surgery in 2003.

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Comment from: Nyaries66, 45-54 Female (Patient) Published: May 02

I am 51 and have had lymphedema in my lower legs for over 20 years now although I was officially diagnosed just 2 years ago! Too many doctors than I can count discounted my swelling and symptoms as overweight symptoms. I do the wrapping, lymphatic machine and compression stockings. Life is miserable and I am often depressed because of how I look. I can't exercise, am getting frequent infections and have constant pain. Finally, a nurse asked me if I was ever seen by a rheumatologist; I have an appointment in a month! Very excited because I have been reading about autoimmune diseases and lymphedema, there is a connection. I have hope I will get answers!

Comment from: reese1980, 35-44 Female (Patient) Published: July 18

I am 35 years old and I have been living with lymphedema for about 10 years now, in both legs. Every doctor I have been to would just prescribe me water pills that didn't work. I also have been going through a lot of crying spells and depression because of the way my legs look, I should not look like this. I am finally getting a pump machine called the Lympha Press today, and I hope it works. Also my doctor has now put me on a stronger water pill called torsemide 20 mg and it is actually kind of working. I wake up and my legs often feel like jelly. It feels very weird to me because the swelling goes down and it is kind of amazing to be able to fit in my jeans sometimes.

Comment from: Liza, 45-54 Female (Patient) Published: April 12

I've got lymphedema and everyday life stinks. The right foot is always swollen, can't be a couch potato all the time, I've put on weight due to lack of exercise. I'm also wearing the support stockings. I want my life back!

Comment from: joan, 75 or over Female (Patient) Published: September 21

I have arm lymphedema; red spots and swelling of hand and arm. I do my daily exercise and pump. With this flare up I wonder if I should continue to pump and exercise.

Comment from: Judith, 65-74 Male (Patient) Published: July 29

I developed lymphedema in the breast and a bit in the upper arm after the post-surgical swelling had gone down. The nurse I spoke with told me "We don't consider it lymphedema if the arm isn't swollen." I Insisted on seeing the doctor the next week when the swelling and pain in the breast was quite bad an NSAIDs were no help. The doctor referred my to a lymphedema therapist, who has helped tremendously, but after radiation the swelling in the upper chest got larger and the opposite arm hurts.

Comment from: CYNTHIA, 45-54 Female (Patient) Published: April 15

I started noticing signs at about the onset on my period. I was always told that I was just fat. But my employer won't honor my FMLA so that I can have treatments.

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